Devastated - please help!

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Well my "beloved experts," as you say, state that those with ASD's may not be as emotionally mature as their peers. Seems you refuse to accept this...think it's a "pull yourself up by the bootstraps" sort of thing...like telling a blind person that if they strain really really hard, they will be able to see!

Are you considering what some (including myself) have suggested and getting a second opinion on the AS evaluation?

Of course!

I have been in touch with the office of Dr. Greenspan in Maryland (he passed away last year but now there are other drs. there) and they said we can talk on the phone as soon as I return from Europe and they will recommend someone really good in the area I live. So yes, we will set up an appointment as soon as I get back, in a week.
Supposedly D. Greenspan was a nationally recognized expert in the area of developmental neurological disorders.
Some people here may have heard of him.

Speaking of which: once I get to this next expert, whoever it will be...do you think we should just get an evaluation from scratch or should I make them aware that we are trying to get a second opinion re: the AS dx he already received?

I am just thinking that they might be more objective if they started with no preconceived notions set up by a colleague.
I don't feel strongly about this though - as I honestly don't know which way would be better.

What does everyone think?

This stuff isn't in the DSM, though these are common co-morbids.

If they present to the clinical definition, then they get separate diagnosis. Thus the label 'co-morbid'.

And thus there need to be rules. If the ADD prevents a child from following the rules...

About the fruit thing though Goodolddays... instead of saying what not to do, you could try to tell him what to do that will stop himself.

I remember spending a lot of my childhood sitting on my hands. Or with my arms crossed. Or jammed into my pockets...

It is in fact CRYSTAL CLEAR that he is not as emotionally mature as his peers. The experts haven't told me anything new with this statement. My question is: where does that leave us, parents?

He's always had a moody, whiny, difficult, cranky personality. The slightest, not-so-perfect feeling triggered by A) "I am not getting what I want here and now" reality or B) "I just had a limit imposed on me" reality - sets him on a cranky, whiny, non-agreeable, defiant path for hours on end. He sometimes even has C) when he gets a deep-seated desire to piss you off out of nowhere (probably a feeling triggered by some kind of hidden frustration).

He absolutely CANNOT COPE even with the tiniest amount of frustration.

The reality is that I cannot construct a life for him where he always gets what he wants in the moment he wants it or he never has any limits imposed on him. This is just not possible - regardless of the clinical condition he has.
It can be ADHD, OCD, ODD, AS, Autism, Bipolar or Severe Mental Retardation. You pick your condition. I don't care.
The only reality there is is that he CANNOT have a life of getting what he wants all the time or a life without limits, or a life without the tiniest trace of frustration - so that the stress, the overload, the tension or other inconvenient feelings he gets as a result of such constraints can be prevented in the first place, as they advise for AS.

Ex: Everything was sunshine and roses, when he woke up;...and then something happens and things start to go South. I found stickers glued all over my parents' bed. I reminded him in a very calm, nice and cooperative voice that he cannot do that, that I expect him to not glue stickers on furniture (we had set that rule many times in the past and he broke it anyway);
and so I started to remove them. This triggered the pissy mood.

"But I like stickers on the bed". Whine, frown, defy. "But why did you remove them? But I want them back on the bed".
Whine, frown, defy, harrass. But I LIKE stickers on beds.

I explained why stickers cannot be applied all over the furniture and I only managed to make myself feel like an idiot for even thinking that such logical and rational explanations will make any difference. But hey - do what the experts say!

In the meantime, some guests my parents were expecting showed up and they, of course, wanted to see my kids. He went into deeper pissy mode, refusing to greet the guests, turning with his back, showing to everyone that he was pissed.
Basically spiting us.

I kept my calm because I could not do the perfect parenting acrobatics of my life right then and there, in front of those people (sometimes social situations simply do not allow for that); but we managed to diffuse his mood so he took it a few notches down. However, he remained on the edge for the rest of the day.

A good percentage of the day he spends it in pissy mode because of the most ridiculous, littlest feeling always resulting from A or B or C above.

When kids are very small you attribute such manifestations to age,of course. The said emotional immaturity. Though you still cannot help but envy those with children as small as yours - who, despite age, still don't manifest such behavior.

But he has not changed much at all in 6 years of life in this department. Simple question is: if he is now STILL emotionally immature in relation to his peers (as you said) does he have any chance of ever improving?
No significant progress has been recorded in the 6 years of his life so far.

How much longer will it take for some visible progress? And if none will ever be made, then this is not "emotional immaturity". It is SOMETHING (whatever you want to call it) that compelled many people in the past to institutionalize their children instead of bestowing a life of misery onto EVERYONE in the family.

It is in moments like this that I start wondering whether our predecessors were right in solving the problem the radical way: you adapt to the world or the world will lock you away. Yes, inhumane. As inhumane as the stress such children put their families through day in and day out.

I should mention that he had horrible colic as an infant to the point where we came to understand clearly what people who shake their infants to death feel in those moments. We, of course, endured like martyrs.
It might also be of relevance to note that he was a very much wanted child, planned to the minute, waited like the Second Coming; so we debuted as parents with the most positive attitude anyone could ever have, determined to do EVERYTHING for this child. The only thing that I sometimes fear may have affected him was that I went through an incredible amount of stress while I was pregnant trying to finish and defend my dissertation.
Two days before the defense I almost fainted with fatigue and exertion.

So did I F him up with my life trajectory? Possibly. But this is no longer of any importance. The only thing I know is that, had I known then what I know today, I would have chosen NOT TO have any children.

Last edited by goodolddays on 12 Jul 2011, 7:25 am, edited 1 time in total.

I tried the positive statements method. It doesn't work. Also, how do you convey the message, in positive statements, that the cherry on the farmer's stand is NOT TO BE touched?
Yes, the merchandise belongs to the farmer. Yes, you keep your hands in your pocket. etc.
So what?

And then he touches it. He is the most impulsive, self-driven creature I have ever seen.
He always does what he needs to do.

I am a big fan of Dr. Greenspan's books and his approach. His approach to helping children is called "Floortime". For young children it's meant to be taken literally....you get down on the floor with them as they play or stim and use his non-intuitive communication methods to open communication with them. With an older child you wouldn't literally be on the floor but his communication methods are still very good and effective. They are also non-intuitive so you do need to read one of his books.

What he does is teach the parent how to teach the child reciprocity, effective communication and the sort of give-and-take that doesn't come naturally to some children and that you are very worried about your son not having. It would be worth your time to read his books and try to adapt his techniques to your son. I did it with my daughter and it has helped her a lot in seeing things from other peoples' point of view. Right now you are still in the grieving stage, ddespairing that this doesn't come naturally to him. Read and apply Dr. Greenspan's methods and you will find a way to teach that which doesn't come naturally.

I really dislike the word selfish. AS kids can be the LEAST selfish kids in the world, IF they understand what is going on, and aren't in distress themselves. Which would be why I tend to tell people my son is "special needs.". They immediately change their expectations and take their leads from him, instead of the opposite, and suddenly they can see. It isn't pandering, it's the same as making sure someone understands their pet is a cat and not a dog and, thus, reacts differently.

If you are raising an AS child, you are going to have to do something most of us find very challenging: stop caring what other people think. Or perceive. Your job is to raise this child, not to please the ignorant around him, and when his needs clash with societal expectations, you will need to favor his needs. This is a challenge pretty much all of us parents had to face, but it made a huge difference. So much difference in fact, that with my son now 14, I CAN go back to teaching him more about what the world thinks; his needs are met, and he's ready for that step (a lot of interesting questions about why the heck does anyone care about THAT, but so it goes). Not to say I skipped all of it all along, because I didn't, but what I taught him was for his sake, like being welcome in a restaurant ( he loves to eat out), or to avoid teasing, not because I gave one iota what anyone else thought. That may be one of the biggest gifts my son has given me: he's freed me from caring about what anyone else thinks. I do what I know is right and essential, period.

And I have a truly "good" child, at this point in time, now that we all understand each other. He would never consider keeping a lost dollar found on the street: It has an owner and should be returned. For all the things he doesn't know to see or care about, there are so many times he does more and goes further than any other child I know.

Please read Tracker's book available free at ASD.com

Hmm I'd tend to just ask for an evaluation from scratch again so there are no pre-conceived notions - thats just to my way of thinking.
When my son was assessed it was by a multi-disciplinary team of three; a senior developmental paediatrician, a child psychologist and a speech language expert. We went and had a meeting for several hours and each of them did various tests with him and while they were doing that the others interviewed us at length. They then went and observed him at home the following week, and then further on another date went and observed him at the kindergarten where he was going at the time. They produced the report in unison and I felt it was quite thorough and didn't feel a 2nd opinion was necessary, it was pretty obvious by then anyway.

As an aside you might find it interesting to run through the M-CHAT test. Its intended as a screening tool for ASD in toddlers, but you might find the questions interesting, or recognise something in retrospect.
When we did this on my son we scored him 18/21 positive and anything 3 or over is classed as a cause to investigate further.
http://www2.gsu.edu/~psydlr/DianaLRobin ... bsite.html

I am about to finish it. I love his writing style!

From your descriptions, my son is not AS then. If he found anything he would want to keep it - because it is exciting FOR HIM to have something new. It really is about him 100% of the times. He would screw the rule to have what he needs to have, even if intellectually, he understands the rules of ownership perfectly.

Like I said, he is the most self-driven living creature in the Universe.

Hmmm...my son's evaluation was done in one day, during three hours - back to back.
I did feel the whole thing was a little superficial.
For example, she asked my son - among others - what is a friend. He said that "it is someone who is nice to you".
Then she concluded in her report that this definition was not deep/complex enough - hence was one of the things related to AS.

I really felt weird about this. Seriously? You would expect a 5 yo to present you with a dissertation on the philosophical meaning of friendship and if he fails, that should be yet another indication that he is AS?

Weird.

You can't decide whether or not your son is autistic based on the fact that he does one thing differently to someone else who is autistic. My daughter is 17, autistic and exceptionally intelligent (takes after me ) and it wouldn't even occur to her to return something she found, for the same reasons you give for you son. if I tried to make her return it to it's rightful owner she would get angry. Even now, although she's now old enough to accept it as the right thing to do once it's gone and she's calmed down. But, she'll still try to keep it next time.

I can't read through all of this thread, I don't have time. But I have picked up on the overriding sense of devastation and loss of future the OP seems fixed on. So I thought I'd share my circumstances.

I'm 39 and was finally diagnosed with autism a few years ago. I've worked all my adult life but in jobs well beneath my capabilities. I went away to university twice but dropped out both times because I couldn't cope with it. Since diagnosis I've had proper support with time management and prioritising and other stuff. I am now very close to completing my law degree.

I am married to a man who was in special ed classes as child without a label because there was no diagnosis of Asperger's available then. He is a perfect, text book example of Asperger's. His special interest as a child was chemistry. The stuff he tells me he used to do in his parents shed would make your eyes bleed. He now a professor of nuclear chemistry.

My brother, also Asperger's studied classics at Oxford University. Academically he is brilliant, but at 42 he still lives at home, quite happily, with my mum and works in a factory in the village we grew up in. For a while he was on the management fast track of an international bank but he gave it up because he couldn't cope with the people or the stress. His primary focus is his sunday league football team. So long as he can do that and go for a beer afterwards he's as happy as a pig in muck.

His son is 17. He struggled through primary school, in fact he missed most of it, refused to go. Eventually he too was diagnosed with aspergers and he got better support. He went to a special unit for a while, passed all his exams and is now at normal college full time studying agriculture. His special interest is growing veg and his mum's garden, his nan's garden and grandad's allotment have been taken over.

My daughter is 17 (18 in 2 weeks) and is engaged to be married to her boyfriend (20) of over 2 years. Her special interest is the holocaust, a result of nanny giving her a copy of Anne Frank's diary when she was 5. She is planning on studying modern history and law at university and ultimately she wants to work with children in Africa. Her autistic drive to pursue her special interest means that already she has strong connections in Africa, with schools, aid workers and polititians. Just recently she met up with the head of the local education department in a town in Tanzania who was visiting here. He was so impressed with her eloquence and passion that she now has an open invitation to work in any of his schools once she's able to get herself out there.

Don't write the future off because of Asperger's. The road is hard and the hurdles are many. But when we're good, by god we're good.

A few posts ago I gave you perfectly good advice about how to handle this. You have to be systematic, repatitive and on top of him until he gets the message. Teaching him, whether he has ASD, ADHD, OCD or whatever, is obviously going to take a lot of time and patience. Try the method I suggested for 3 weeks. Do it consistently and constantly then see if there is any improvement.

For my daughter-telling her is not enough. Things have to be shown to her. So for her, with the scenario of the touching the fruit I would need to physically restrain her hand until it occurred enough times to sink in to her mind/memory. You have to understand the issues here are neurological-the pathways that are involved in the reasoning are not functioning the same. There is an autistic boy in my daughter's social skills class that I know if I pull out my phone in the waiting room he will come try to take it from me-and it will lead to a meltdown if I don't give it to him. I made the mistake once of letting him look at it and hold it when he saw it and now he thinks he can do that each time so I don't pull it out in front of him anymore. I know it is possibe to teach him over time not to touch my phone but from where he is right now he doesn't "know" that.

I tend to think of my grandmother who developed Alzheimer's in her later years. Her whole life she was the picture of decorum, manners, and elegance. When the Alzheimer's changed the neurological wiring in her brain, it caused her to say and do things that she would never have done prior to the "re-wiring". She didn't understand that she would NEVER desire to do these things-but the reasoning pathways were impaired and she could not "remember" that these new actions were improper. I think of AS somewhat similarly (though I know it is different so don't jump to the conculsion that I am saying it is the same)...the person underneath the neurological functioning is there-but their reasoning/theory of mind are changed by the different neurological pathways. Someone a long time ago on this board once described to me (or maybe it was Tracker's book?) how a meltdown is when these pathways become overloaded so the brain has sort of a "storm" of activity that overwhelms them. When you think of these things this way, it helps to come from a place of unerstanding and empathy-rather than judgment and futility-that the person underneath the behavior deserves your respect.

The pathways can be "trained" but perhaps it is a different route of reasoning-perhaps for some it is a function of laying down the memory. But for others, just that memory will not be enough.

This is why my daughter (and other Aspies) are what people are describing as Rule Bound-very literal and bound by "rules" they have learned. They don't just pick up the rule on first mention (at least my daughter doesn't)-but a continual reenforcement of the rule tends to make it very finite and accessible in their brain. For instance my daughter is 8 and can graduate from a carseat to a booster. But she is so rigid in her thinking that just me telling her that she's 8 now and can move to another seat has not been enough. She is still insistent on sitting in the car seat because she believes that it is unsafe otherwise because that has been the "rule" for years and I explained to her "carseats make you safe" so now the shifting of the gears is difficult.

I'll add to that, that also we can't always transfer rules from one obvious situation to another.

For example, my daughter put a loaf of bread in the microwave to defrost it. She didn't know how long it needed or on what setting, so she put in on max for the max time. Then she went and got engrossed in the computer. I came in to find the house full of smoke and flames coming out the side of the microwave. I was livid, but she genuinely couldn't see why, afterall she hadn't done it on purpose and she'll certainly never do it again. She now knows that if you put bread in the microwave for that time it will burn and start a fire.

Few months and one new microwave later. I'm in bed ill and get woken up by the dogs going mad at the bedroom door. I open the door and the house is full of smoke. Guess what? Yep, the new microwave is on fire. Needless to say I'm completely livid. She doesn't get why and I say 'remember the bread' and she says 'yes, that's why I was trying to defrost a cake because I didn't want to set the microwave on fire with bread'. Arrrrrrrh!